Hi all just had a unexpectedly phone call from doctor, said they had been intouch with rheumatologist about me they said pmr can last for several years and I just need to keep reducing by 0.5 mg lm now on five he said this was a low dose and not doing me any harm, he also said some people never get off pred, I have never met this person but like his advice what do you ladies think, I would be interested to know, by the way I feel I'm doing ok at this time, thanks for being there.
Lowering pred: Hi all just had a unexpectedly phone... - PMRGCAuk
Lowering pred
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Snnib
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Hallelujah - who is this paragon? What hospital? Can he be cloned?
Don't know his name but it's airedale hospital Yorkshire, got a real surprise when phone rang it was 6.30 in the evening din't know doctors was still open at that time.
a few of them about now. Been doing bedtime reading obviously 😂🤣😂
Briliant
I cannot believe this person really exists. Must be some sort of dream.
PMRproAmbassador
Oh - forgot to mention that my bone density hadn't changed much in 12 years and I haven't taken calcium the entire time. I do take vit D religiously.
I took it for4 years when I was 17 and diagnosed with Stills Disease.....
Nextoneplease in reply to
And I took it for years in my 30’s when I was diagnosed with myasthenia gravis. Mostly on low doses but if memory serves, I started on 60mg. Such a long time ago!!!
Hi minka,
In an ideal situation no one would be on prednisolone long term but sadly there is currently no alternative treatment to reduce the inflammation and alleviate the pain and stiffness caused by PMR.
It's also is crucial for treating the more serious condition of GCA and for preventing irreversible blindness.
Prednisolone does indeed come with some potentially harmful side effects, but many of these can frequently be eased, minimised and even in some cases completely eradicated.
Obviously some people will struggle more than others and experience more challenges than others when taking steroids, but education is key here.
I have been on prednisolone for 4yrs now and treat it as my ally in my fight against PMR and not my enemy.
I would love to not be taking steroids, but like for all of us here, short term steroid use will not be effective.
Reducing them (tapering) must be done very slowly and very gradually too, so as PMR/GCA sufferers we're unfortunately never going to be taking prednisolone for just a month.
I agree with you on your point. I'm just stating what doc told me short term when I was on it long term I had to take calcium D3 rume told me. I know for some people it's long term and I might have to go on it again.Did not mean to offend my apologies to every one. It's been 12 years when I was on it and was free of it after 2 years now it's back with a vengeance.
I wasn't at all offended minka. It's not always easy to say what we want to say and for it to be interpreted in the way we want it to be. Things get 'lost in translation' sometimes.
People just wanted you to understand that there are indeed many valid reasons for being on steroids long term if you didn't already understand that.
We're all constantly learning on this forum.
Speaking for myself......no harm done so please don't worry.
My GP diagnosed PMR on 8th February 2013. The ESR and C-reactive protein results are, however, inconclusive but my GP is convinced about the diagnosis is correct and offered to commence me on Prednisolone 15mg initially for 3 weeks, then gradually to reduce doses 3-weekly to 12.5, 10 and finally monthly by 1mg from.7.5mg to 0. The associated risks and side-effects terrify me; particularly Cushingoid symptoms (Moon face, buffalo.hump and abdomina.l distention, and hursuitism, hair loss and fragile skin). I am coping adequately with Volterol 12-hour gel nightly, finding the pain and stiffness across my shoulders, neck and arms eases within 30mins of waking and ceases until earlythe next morning. I know that Prednisolone only settles the pain and stiffness from PMR, and while on it one could still develop GCA. Hence, I am intending not to take Prednisolone unless my PMR symptoms become intolerable. Referring to NICE guidelines, 15mg is the recommended starting dose for patients with PMR, and side-effects and risks of diabetes, hypertension, cancer are heightenef on doses above 7.5mg.
How have you been since starting Prednisolone, regarding the associated health risks and side-effects? Once started, it is not a drug one can stop instantly and this worries me in view of the nasty affects some have from it. I am only recently recovered from chemotherapy, and now this too.
i know to get urgent medical help should the classic symptoms of GCA come on... an horrifying concept.
I know that Prednisolone only settles the pain and stiffness from PMR, and while on it one could still develop GCA.
One could develop GCA, that is true, but not a given..the most important word is COULD….and you are much more likely to develop GCA if Pred is not taken.
Pred controls the inflammation caused by the underlying illness, and if that isn’t controlled it can lead to a lot worse things besides GCA.
Most of the side effects of Pred can be managed, and I think you have got yourself into a bad place by concentrating on the negative effects of the drug rather than the negative effects of not taking it.
Of course at the end of the day it is your choice, but I would urge you to be a bit more open minded.
Thank you for responding so promptly. I need to establish whether or not Prednisolone is also to be prescribed for me to offer some protection against GCA development too.. Should there be a risk of that at the stage I am at currently, then I would hope to be spared the worst as I am only now beginning to feel like the old me after suffering the distressing effects of chemotherapy.
I can fully appreciate that following your cancer treatment you do not wish to commence on another drug - but you do not want to risk the possibility of GCA.
Having been misdiagnosed for 18 months - my first dose of Pred of 80mg [considerably higher than the usual starting dose of 15mg for PMR] was administered after losing the sight in one eye. It took 2 weeks at that dose to know the sight in my other eye had been saved… possibly the worst 2 weeks of my life -going to bed each night not knowing if I would be totally blind the next day…not something I would want anyone else to go through.
So my message would be - take the 15mg if you have PMR - the side effects of that are nothing compared to those at 80mg…along with the possible complete sight loss.
It is so kind of you to describe your terrible experience. I'm very pleased to read that your vision was saved in the other eye. I am really grateful, and am seriously considering your suggestion albeit that I'm extremely anxious about the affects of Cushing's Syndrome. Apparently the chance of having it is 50/50... I have very young grandchildren, and never did they see me without hair. There would be no way I could hide the disfiguring facial and physical Cushingoid affects. 😪
To be honest I don’t think your grandchildren would be too worried about your Cushingoid affects. Although they may be upsetting for you, they are not disfiguring as you as you imply and as you say only 50/50 chance of being affected.
You will still be their loving grandma -and that’s what they see, and care about.
Did you really want to take the risk of not being to see them.
My story - not all doom and gloom -
healthunlocked.com/pmrgcauk...
I hope do; thank you for your lovely message Dorset Lady.
I started on 15 mg and I didn't have any of the side effects you list. That's not to say pred didn't cause some issues (increased optical pressure, higher than normal blood sugar, and thinning hair - but not drastic, noticeable only to me and my hairdresser). Every single one of those side effects was diminished as my dose tapered and all are complete non-issues today although I've been on low dose pred for 6-7 years now.
No nsaid, even one absorbed through the skin rather than ingested, is without potential and sometimes serious side effects so they aren't risk-free any more than pred.
I have estimated the on 15mg reducing down to 7.5mg would take about 12/52 or around 3/12. Thereafter, reducing by 1mg every month should mean I could eventually finish the course completely or only be kept on a very low maintenance dose like you. I would hope that the associated conditions you had, did resolve completely in time. I am diabetic, and am hypertensive. My fear is of having more serious health conditions accrue after starting Pred'.
I was abet to taper to 3 by the end of the first year. However, please note that it took another year to get to 1.5, and in fact I've been at or near 2 since. Yes, all the effects, which were invisible, resolved in step with my taper. My eye doctor saw me every few months for the first year, and now sees me annually. In the before times it was every second year. He says annually as long as I take any pred. Blood sugar got properly low eventually, but I was never even "prediabetic" - although I was told I was a small step away from that. I basically stopped eating all "white" carbs. Probably that also helped keep my weight down, although I was so thin by the time I was diagnosed a few extra poinds wouldn't have hurt. I've since lost more, and regained only part of that so weight gain has not been part of my PMR/pred picture.
A lot of us are quite ambivalent about pred. You might enjoy a story I wrote several years ago. I might write it a bit differently now but it fairly represents how I felt then.
healthunlocked.com/pmrgcauk...
A fascinating tale and one seemingly descriptive of a somewhat daunting journey one must embark upon in its company. I am already trying to lose weight, gained after years with painful osteoarthritis pre bilateral hip replacements.
I have been on pred for nearly 14 years a lot of it at above 10mg and more recently at nearer 20mg. I'm overweight but not typically Cushingoid - I was for a few months on methyl pred but I was switched to prednisone and went on a low carb diet, lost 35lbs of weight I had mainly gained with untreated PMR because I couldn't exercise and was depressed so comfort ate. My hair fell out with untreated PMR - it stopped with pred and the teen/20s curls returned. I did have a lovely beard on methyl pred - never been a problem with prednisolone or prednisone. I bruised at 15mg+ - now I'm below 10mg the bruising is stopped and I am also on anticoagulant therapy, I have atrial fibrillation which was almost certainly caused by the autoimmune part of PMR. My bone density had hardly changed in 12 years on pred, still firmly in the middle range of osteopenia which is normal for our ages. I have no sign at all of diabetes, Hba1c of 37.
There are two sides to the side effects stories. They can mostly be minimised or even avoided when you know how.
I too have osteopaenia, discovered by bone density scanning prior to having left, and later right total hip replacements. I am prescribed Adcal taken twice daily. I have also sustained simultaneous fractures at both ankles, and wrist from in last 20 years. My GP has reassured me of the reduced risk of osteoporosis for me while remaining on Adcal. Thank you for helpful summary on your personal experience on Pred. My hair is growing, although doesn't seem as thick as it was before chemo. Based on what you said about thinning hair with PMR, before starting Pred I wonder if that would be the reason why mine is thinner.
Hi jsc50,It's true to say that the side effects you've hi-lighted can manifest in some people, and the higher the dose being taken, the higher the likelihood of them occurring.
However, I have been on steroids for 4yrs and most importantly have worked hard to maintain a healthy weight through eating a low carb (not no carb) diet.
If you're able to maintain a healthy weight then you already are significantly reducing your risk of developing steroid-related diabetes & hypertension.
Maintaining a healthy weight has also reduced the extent to which I developed moonface...in fact I alone noticed what I perceived to be slightly puffier cheeks but absolutely no one else did.
I experienced what I'd call 'peach fuzz' on the side of my face early on, but this disappeared completely at lower doses. My hair has definitely been thinner but is actually 'thickening up' again now...... enough for my hairdresser to have noticed.
As for my skin, I use simple, unperfumed, natural products both in the bath and topically on my skin, and I moisturise at least twice daily with a gentle nourishing moisturiser. I do tend to bruise more easily and grazes, etc take a little longer to heal but my skin is otherwise in pretty good condition.
When I was first prescribed prednisolone, I was extremely scared and had exactly the same concerns as yourself, but you must remember that we all have our own individual & unique set of circumstances, and our own unique combination of health issues, so none of us will experience all of the same potential side effects.
We certainly don't all experience every potential side effect listed.
A definitive diagnosis of PMR unfortunately does require steroids. Things may seem manageable for a while without them, but the inflammation will definitely build up more & more over time and whilst it's doing so, more & more damage is being done to the body.
I can't tell you what to do. I can only report on my own experience and you must do what's right for you, but please make sure you educate yourself as much as possible before making a firm decision to shun steroids, and please take a look at the FAQ's section on this forum, where many of your questions will be answered and much will be explained.
I'm four years on, and although I've had a few challenges to overcome, almost every side effect I've experienced, I've been able to either significantly ease, minimise and in some cases, completely eradicate.
Steroids are definitely a toxic medication but learn as much as you can about them (from legitimate sources... like here) and with that knowledge you'll be able to treat them with due respect and hopefully bring about a more positive outcome.
Kendrew, thank you so much for providing so clearly and concisely your personal experiences on taking Prednisolone treatment for PMR. Presumably the initial dose prescribed you was 15mg, or higher? My aim is to enjoy life wholly for as many years as possible, with a background of ovarian cancer. I have taken on board all the information that you and others have been kind enough to provide me. I shall be seeing my oncologist on the 16th when I will discuss with him the associated risks of blood cancers during the first six months while on the higher doses. This fact is worrying me because of my medical history.
There is some dispute there - it is more than possible that the increased rates of certain diagnoses in the first year after diagnosis and treatment may be because of the higher level of medical surveillance. PMR can be caused by an underlying cancer. PMR isn't the disease, it is the name given to a set of symptoms with an underlying cause and there are several possible causes. The untreated low levels of inflammation are also potential causes of cancers as well as vasculitic disorders. The inflamed linings of the arteries may be the reason for clots forming or the formation of aneurysms in the wake of GCA.
Hi again,
I started off on 15mgs and then went up to 40mgs a few weeks later because I'd started to develop head pain a few days in to taking the pred.
The fear was obviously GCA but it turned out to not be that and was in fact just my body reacting to the pred.
On every taper, I develop a headache for a few days and then it subsides.
I'm currently on 3.5mgs of pred but during the 4yrs since diagnosis I've had to increase back up to 15mgs once following a flare and up to 30mgs once following an occurrence of urticaria which required both antihistamines and a higher steroid dose to sort it.
I understand completely that you have some other health issues in the mix and your concerns will obviously influence your decisions.
Wishing you all the best though and happy to help with anythingI can.
Just seen your last message. Thank you for describing your maintenance regime on Pred'. Interestingly, during the early hours and on waking I have had the slightest sensation of aching over my crown and deep inside my eye sockets causing me to massage the area above each eye. When I use my pillow to support the head, it soon settles. It could be referred pain coming from my neck, perhaps. I shall mention it to my GP though; hopefully it will not be signs of anything more sinister. I feel less anxious about that since reading your message, for which I am extremely grateful and for your kind offer of ongoing support.
With all good wishes.
Sorry to hear it’s returned …
Thanks I think it was my wording brain fog. I have blood pressure monitor on 24 hrs and yesterday's walk into hospital has really screwed me up bones wize.realy hard walking on feet but I got to go for it off Since taken of pred .all my bones seems to have dried out
And I'm trying to not get stressed on paracetamol only. Nevere had so many problems as this before.
One pain in back and then all this. Regards john
Appols not up to speed see bellow comment.
Appols see bellow comment not up to speed from 11 years ago being in remission and what Rumi told me been free of it for 10 years now back with vengance
See bellow comment not up to speed after being in remission for 10 years appols
Don’t we wish it would only be a month!
I have just recently agreed with my Rheumatologist to stay at 5 mg Pred indefinitely. I am 87 and was diagnosed with PMR and GCA in 2019, Over the years I have reduced to 2 mg which resulted in a massive GCA flare in 2022. It has taken me until now to reduce to 5 mg. At the moment I am well and comfortable and staying at this level gives me a good quality of life. Although one never knows, I am hoping to stay healthy and pain free and I hope this works for you too.
Well, I wish I had your doctor. Mine is perfectly OK, diagnosed me almost straightaway, makes sure I have blood tests every 2 months. But he won't listen to my suggestions of slow tapering. In fact he insists I stay on 7.5mg until this October, when I will have been on this dose for 3 years, and then just abruptly stop taking it because he says my PMR will be gone. He must have a crystal ball! My mother had PMR and was on steroids from mid-70's until she died at 91. Sadly, in Paphos there are only two rheumatologists and I have already seen the other lady who initially diagnosed me with fybromyalgia and left me to get on with it. Rather than have a frank exchange of words with my current rheumy (I won't win) I've decided to start my own slow tapering. If I can get to say, 5mg, by the end of the summer I will feel I've achieved something. If I have to stay on 4/5mg indefinitely I won't be too worried. I do have a stock pile of prednisolone, all within appropriate dates. You are so lucky to have an open minded and approachable doctor. All the best to you.......
In fact he insists I stay on 7.5mg until this October, when I will have been on this dose for 3 years, and then just abruptly stop taking it because he says my PMR will be gone. He must have a crystal ball!
He may have a crystal ball, but he obviously has no idea about long term steroid use and the affect it has in your adrenals - that suggestion is a recipe for a full blown adrenal meltdown…and life threatening for you.
Do it your way…and may ask him if he realises what damage he could cause.
"he insists I stay on 7.5mg until this October, when I will have been on this dose for 3 years, and then just abruptly stop taking it because he says my PMR will be gone. He must have a crystal ball! "
Never mind a crystal ball - do ask him if he is trying to kill you! Stopping 3 years of pred treatment while you are at 7.5mg is likely to induce a full blown adrenal crisis requiring hospitalisation at best and life-threatening at worst. And you could probably benefit from some input from an endocrinologist on that score which would widen your scope.
Thanks PMRpro, totally agree. He seems to be losing the plot!
Meant to say....will take you advise and speak with an endocrinologist.
Well, he's an idiot. Sorry.
Thanks for your post PMRpro saying it as it is is great. Pred totally changed things for me. I don't know what would have happened otherwise. I felt so ill before diagnosis of GCA in May 2020 right at the start of first lockdown. I felt lucky to get pred and treatment at that time. If had been told l could only have it l month l would have topped myself. My dexa scan last year was virtually normal and l still take pred.
Thank you Kashmirii. May I assume you were started on a much higher dose, having been diagnosed with GCA? Might I ask you how high, and how you were symptomatically?
Good morning, l started on 60 mg pred. Like Dorset Lady l am sure l was misdiagnosed for quite a while, l started to feel of colour regularly, l was very tired and had low mood and little energy, headaches were more or less a daily thing. This went on for months. The headaches got worse and l would spend longer in bed or just watch afternoon TV which was very out of character for me. Five months before my diagnosis in May 2020 l started getting what felt like lightning flashes or electric pulses from my left temple and down my face, my scalp was tender and l had migraines and aches constantly across my shoulders and in my neck, longer in bed and l felt very unwell at times. Thank heavens for the blood test l had in 2020 and my GPS rapide introduction of pred.
Oh dear Kasmirii, your symptoms were far more severe than mine are currently. It must, I'm sure, been quite frightening until you finally knew the actual cause. Hopefully, as my symptoms are not as bad as yours were may be the standard starting dose of 15mg might adequate. I am pleased that your PMR symptoms now appear to be well-controlled, and wish you all the best for the future.
Your experience and timeline mirror mine pretty much. So you mind me asking how much pred are you currently taking?
Hello there, I am also blessed with a GP who talks sense about taking Pred and lets me decide when and by how much I reduce. (Diagnosed in april 2020 )
Currently still on 1mg and any attempts to lower have been met with mild PMR pain.
I have stopped trying to reduce any further and my lovely GP has told me he is very happy with my progress and if I stayed on 1mg for the rest of my life it would not do me any harm.
I have never been referred to a rheumatologist as my condition has always been well controlled by pred and my GP has arranged any extra tests such as bone scans , bloods and an xray when i had really bad shoulder pain to exclude an additional problem. From this forum I have sadly learned that there are many medical people out there with little understanding that despite its side effects , pred is the only drug that will relieve the pain of PMR and reduce the risk of complications such as GCA.
My quality of life before Pred was awful and I fell very lucky to have found this forum which has helped me understand my condition.
I hope you continue to do well.
my rheumy told me he would be fine if i stayed on 5 for the rest of my life, at 65 yrs old. It seems to me that any time I get below 5 my body can't handle it.
I have just seen a Rheumatologist and he said the same about a low dose, that it would do no harm to be in a low dose and also help with a bulging disc in my neck. Hope that stops my GP from banging on about getting off. Am still tapering cos I would love to be free of Pred wouldn’t we all 😊
Thank heavens. At last a knowledgeable rheumy and a GP anxious to learn! You iucky person.
tried for 2nd time to reduce Pres from 4 to 3 mg but no good as pain returns . Have app. With rheumatologist this month hope he can advise .
Try just 1/2mg and use a slowed taper if you aren't already doing so - in the FAQs.
But you aren't heading relentlessly for zero - you are looking for the lowest effective dose, the lowest dose that works. It doesn't mean you won't get lower - just not yet. And it is emphasised in the Treat to Target paper I posted about the other day,
agree with PMRpro-approach it slightly differently
At such a low dose one might try 1/4 mgm drops.
Hello from a USA member of this group. I am SO THANKFUL to have found it 8 years ago, when I was newly diagnosed. In reply to your post, with my help, my rheumatologist eventually changed her tune regarding getting off pred ASAP. I have been down to 5mg for 3 years now. Each time I tried to lower, flare, back up, then slow down again. Now, both my rheumatologist and my PC Dr, agree that this is where I stay. I wish you well, and again, I am thankful for all information shared and moderators knowledge.
hi, I am a 72 year old male and I have been on Preds continuously since August 2014. I have been up and down with my dosage and with the pain/flu-like symptoms and I am now comfortably on 1mg per day. I have also been on Methotraxate for 5 or 6 years doing 20mg once a week. My consultant said last month that I can drop my Preds to 1 every other day or 0.5 per day if I want to, but I am wary.
About 2 and a half years ago I went ‘cold Turkey’, because I thought I was Superman and the pain got worse suddenly and I ended up fainting in the bathroom in the middle of the night. Hope this helps.
My rheumatologist said the same thing - if I can't get below 3mg, that's ok. But I still hope to be free of it entirely!! (Currently at 6.)
I am in US and have a wonderful young GP who told me I know more about it then him so he is letting me self dose. I've learned so much from this forum and decided if I can get to 5mg by the end of this year I am going to stay there for a while. Started at 20mg in Sept 2022 and now at 8.5. The jump from 11 to 10 took 8 weeks but I did have Covid in December. My only negative so far taking prednisone is hair is falling out but that could have been Covid too. Thankfully I have a lot of hair to lose. 🙂
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